update

floridajo
floridajo Member Posts: 480
edited March 2014 in Ovarian Cancer #1
Well friends I have gotten the news that I am indeed having another recurrence. I'm so disappointed because I just finished Topo on June 2nd. I will be having this fluid drained tomorrow and sent to see if I'm ER positive. Then I will start Navelbine next Thurs. 2 weeks on 1 week. Since 6 cycles doesn't seem to last me too long were probably gonna shoot for 9 rounds. After that and if my ER test comes back positive we will begin Tamoxifen orally to see if we can stretch my remission times.
Anyone ever had navelbine?? How did you handle it and what type of side effects did you experiecne??. Well gotta run,I have some stat labs to do before the paracentisis tomorrow. Thanks for your prayers...(((hugz)))~~~Joanne

Comments

  • paula2
    paula2 Member Posts: 162
    #2
    Something in the water?
    Joanne, What a terrible time we are in. Must be the season for recurrence, as I am knocked out with high numbers and yet another recurrence to fight off. I used Navelbine with oral Xeloda for the last 6 weeks and my system just wasn't strong enough to work with the therapy, so numbers kept going up. Doc did say that Navelbine is generally easy to take, so if you are stronger than me, you have a good chance of responding. I know how the ascites feels now, too, and am facing a nutrient line because the bowel is partially obstructed. It will hopefully give the gut a rest and the bloating will lessen. How much relief do you get from draining? My onc sez that chances are, I will fill back up in no time. The draining sounds so traumatic. You must be exhausted! I have to admit to being really frightened of all this pain. I'd hoped for smoother transitions, once I got good pain relief. The gassy stomach cuts right through hard drugs.

    I'm due for a second treatment of something called Mytoxzahntrone, (spell). It's every three weeks. The first treatment didn't take my hair, nor did the Navelbine. I hope it's potent enough to lighten the tumor load. I am afraid to be on the short list now. Please tell me, is this about your 7th or 8th new chemo?

    I'm here, cheering you on with hope for another remission or at least a maintenance level for you. My heart is hurting for all of us having to suffer this insidious disease. God be with you, Joanne.
    Paula2
  • kris43
    kris43 Member Posts: 275
    #3
    paula2 said:

    Something in the water?
    Joanne, What a terrible time we are in. Must be the season for recurrence, as I am knocked out with high numbers and yet another recurrence to fight off. I used Navelbine with oral Xeloda for the last 6 weeks and my system just wasn't strong enough to work with the therapy, so numbers kept going up. Doc did say that Navelbine is generally easy to take, so if you are stronger than me, you have a good chance of responding. I know how the ascites feels now, too, and am facing a nutrient line because the bowel is partially obstructed. It will hopefully give the gut a rest and the bloating will lessen. How much relief do you get from draining? My onc sez that chances are, I will fill back up in no time. The draining sounds so traumatic. You must be exhausted! I have to admit to being really frightened of all this pain. I'd hoped for smoother transitions, once I got good pain relief. The gassy stomach cuts right through hard drugs.

    I'm due for a second treatment of something called Mytoxzahntrone, (spell). It's every three weeks. The first treatment didn't take my hair, nor did the Navelbine. I hope it's potent enough to lighten the tumor load. I am afraid to be on the short list now. Please tell me, is this about your 7th or 8th new chemo?

    I'm here, cheering you on with hope for another remission or at least a maintenance level for you. My heart is hurting for all of us having to suffer this insidious disease. God be with you, Joanne.
    Paula2

    We are here for you
    Joanne & Paula -

    It is so distressing to hear your news. I can hear the fear in your posts and wish there was something we could do besides saying prayers. It is a horrible feeling not knowing what to do - I guess all I can hope for is that you both know that every one of the women who comes to this site has you in their hearts and we are pulling for you.

    I hope that everything goes well the next couple of days and please keep us updated. Hugs.

    Kris
  • floridajo
    floridajo Member Posts: 480
    #4
    paula2 said:

    Something in the water?
    Joanne, What a terrible time we are in. Must be the season for recurrence, as I am knocked out with high numbers and yet another recurrence to fight off. I used Navelbine with oral Xeloda for the last 6 weeks and my system just wasn't strong enough to work with the therapy, so numbers kept going up. Doc did say that Navelbine is generally easy to take, so if you are stronger than me, you have a good chance of responding. I know how the ascites feels now, too, and am facing a nutrient line because the bowel is partially obstructed. It will hopefully give the gut a rest and the bloating will lessen. How much relief do you get from draining? My onc sez that chances are, I will fill back up in no time. The draining sounds so traumatic. You must be exhausted! I have to admit to being really frightened of all this pain. I'd hoped for smoother transitions, once I got good pain relief. The gassy stomach cuts right through hard drugs.

    I'm due for a second treatment of something called Mytoxzahntrone, (spell). It's every three weeks. The first treatment didn't take my hair, nor did the Navelbine. I hope it's potent enough to lighten the tumor load. I am afraid to be on the short list now. Please tell me, is this about your 7th or 8th new chemo?

    I'm here, cheering you on with hope for another remission or at least a maintenance level for you. My heart is hurting for all of us having to suffer this insidious disease. God be with you, Joanne.
    Paula2

    Paula
    I'm so sorry you having a recurrence,is this your 1st one?? This is my 3rd recurrence and my 6th differnt chemo and also I have had 51 treatments so far..and I'm approaching 4 years since diagnosis. Once the fluid is drained I know I'll feel 100% better. I have had ascites drained before this is my 4th drain. If you drain the ascites and then start on chemo it should be able to keep any more ascites from forming..or at least that has been my experience. It's not a painful procedure either,just a bit of pressure. They even have ports for you to be able to drain yourself at home now. Since I seem to only get ascites ocassionally I wouldn't ask for one...but if it begins to be something that happens frequently then I will look into it.
    I have never heard of the chemo you are on..is it easy to tolerate??? Well I gotta run,I pray for smooth and painless days ahead for you...(((hugz)))~~~Joanne
  • saundra
    saundra Member Posts: 1,370 Member
    #5
    Once more
    Joanne, what a bummer. I will be anxious to hear how the new drug reacts on you. I still have one more lower dose of Taxol on the 30th, then a new scan and physical to see if my increasing CA125 is the cancer or the result of the arthritis medication causing the increase. Lots of disappointment on the board lately. It's like everyone is in the same boat all of a sudden.

    I use a daily reading from the book "Daily Light on the Daily Path" for my meditation and yesterday the verse of focus was Ruth 3:18, "Wait, my daughter." Guess we are all waiting.

    "You do not realize now what I am doing, but later you will understand." John 13:7

    Are the hurricanes coming your way? Thinking of you... Saundra
  • paula2
    paula2 Member Posts: 162
    #6
    Joanne
    Thanks for the note on ascites. I am so uncomfortable with the distension that I can't eat or have bowel movements and have lost strength and weight. A ct this morning did not show an obstruction after all, but I didn't use the contrast and didn't get a full picture. My onc. is reluctant to drain but I am going to ask for it next week. For the week-end I'm on a liquid and laxative diet to try to get things moving. Insurance won't pay for a nutrient line unless ct shows obstruction.

    This is about my 6th new therapy, maybe 4 or 5 recurrences in the last 3 years. I usually don't get very long on the chemo, before numbers start going up again. I enjoyed a 3 year remission after the first round of surgery and chemo in '01. Thought I'd never have to go through this. The body just gets weaker. I really need a break but cannot risk it because the numbers will immediately spike again. My best time was with tamoxifen, as it gave me months to travel. I wish the xeloda oral would have worked better.

    For now, I need to concentrate on getting stronger to be able to fight with the therapy.

    You sound better as of the last post. I hope so. It is crushing to get that news again and again. I hope you are strong and responsive to treatments ahead. Thank you again for the positive input on ascites or fluid draining.

    Prayers and good thoughts your way,
    Paula2
  • green50
    green50 Member Posts: 312
    #7
    paula2 said:

    Joanne
    Thanks for the note on ascites. I am so uncomfortable with the distension that I can't eat or have bowel movements and have lost strength and weight. A ct this morning did not show an obstruction after all, but I didn't use the contrast and didn't get a full picture. My onc. is reluctant to drain but I am going to ask for it next week. For the week-end I'm on a liquid and laxative diet to try to get things moving. Insurance won't pay for a nutrient line unless ct shows obstruction.

    This is about my 6th new therapy, maybe 4 or 5 recurrences in the last 3 years. I usually don't get very long on the chemo, before numbers start going up again. I enjoyed a 3 year remission after the first round of surgery and chemo in '01. Thought I'd never have to go through this. The body just gets weaker. I really need a break but cannot risk it because the numbers will immediately spike again. My best time was with tamoxifen, as it gave me months to travel. I wish the xeloda oral would have worked better.

    For now, I need to concentrate on getting stronger to be able to fight with the therapy.

    You sound better as of the last post. I hope so. It is crushing to get that news again and again. I hope you are strong and responsive to treatments ahead. Thank you again for the positive input on ascites or fluid draining.

    Prayers and good thoughts your way,
    Paula2

    My prayers are with all of you
    I use a stool softener the week of chemo and whenever I think I will have a problem. It is over the counter that drs. tell you to use its, MiraLax. Its a tasteless powder that you put in water. I use it once a night and believe me I use to have big problems until I use this and it keeps me regular. I know chemo and or steroids can cause problems with the digestive track. This stuff worked for me and you can eat and feel a whole lot better. I know this isn't the greatest thing to talk about but believe me it was a great help to me. It is not a laxative but a safe stool softener. Wal-mart or any drug stores have it. Me I have no problem eating and since I take this everything is better. I also take a lot of vitamins including stress tabs and iron vitamin D,E, and fish oil but anyway this Miralax helps expecially since I take iron. I pray for all of you and it is so nice to have people who understand and you can say anything and talk to. God be with you and I hope all goes well.
    Sandy sandell51@yahoo.com
  • floridajo
    floridajo Member Posts: 480
    #8
    Ascites Drained!!!
    Hello all,

    well I had my ascites drained last Friday and the response was immediate. The pain all but stopped while I was on the table. They drained 3650cc off me which is equal to over 9 lbs of fluid weight. So now,I'm looking very thin,my skin is just hanging off my arms. I hate that especially for someone who worked out her arms as much as I did.

    Paula--I would insist that my Dr. remove that fluid. I have been able to eat for the first time in 13 days. I'm still not eating a whole lot,but I'm eating and keeping it down. Since they removed so much fluid from me,they told me to expect pain for a couple of days and boy are they right. I feel like I have done about 200 sit-ups or more...very very sore!!! Other than that I'm happy and much more able to control the pain. I will keep you in prayer~~~Joanne
  • saundra
    saundra Member Posts: 1,370 Member
    #9
    floridajo said:

    Ascites Drained!!!
    Hello all,

    well I had my ascites drained last Friday and the response was immediate. The pain all but stopped while I was on the table. They drained 3650cc off me which is equal to over 9 lbs of fluid weight. So now,I'm looking very thin,my skin is just hanging off my arms. I hate that especially for someone who worked out her arms as much as I did.

    Paula--I would insist that my Dr. remove that fluid. I have been able to eat for the first time in 13 days. I'm still not eating a whole lot,but I'm eating and keeping it down. Since they removed so much fluid from me,they told me to expect pain for a couple of days and boy are they right. I feel like I have done about 200 sit-ups or more...very very sore!!! Other than that I'm happy and much more able to control the pain. I will keep you in prayer~~~Joanne

    Thanks for the report
    Glad to hear that you are all dried up. LOL. A little pain for a little gain so they say. I will be doubling the prayers for you and Paula as you go thru this again. At least you had a little time to be grateful for. Did you play with the grandkids? Saundra
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    #10
    floridajo said:

    Ascites Drained!!!
    Hello all,

    well I had my ascites drained last Friday and the response was immediate. The pain all but stopped while I was on the table. They drained 3650cc off me which is equal to over 9 lbs of fluid weight. So now,I'm looking very thin,my skin is just hanging off my arms. I hate that especially for someone who worked out her arms as much as I did.

    Paula--I would insist that my Dr. remove that fluid. I have been able to eat for the first time in 13 days. I'm still not eating a whole lot,but I'm eating and keeping it down. Since they removed so much fluid from me,they told me to expect pain for a couple of days and boy are they right. I feel like I have done about 200 sit-ups or more...very very sore!!! Other than that I'm happy and much more able to control the pain. I will keep you in prayer~~~Joanne

    PTL!
    Dear Joanne, so glad to hear the ascites has been drained, and boy do I know the before and after pain. The after pain is from all your organs getting readjusted. Prayers for your appetite and ability to eat to return, the pain to be gone and your stregth to return so you can continue the fight. Sending buckets of prayers n hugs Bonnie
  • paula2
    paula2 Member Posts: 162
    #11
    floridajo said:

    Ascites Drained!!!
    Hello all,

    well I had my ascites drained last Friday and the response was immediate. The pain all but stopped while I was on the table. They drained 3650cc off me which is equal to over 9 lbs of fluid weight. So now,I'm looking very thin,my skin is just hanging off my arms. I hate that especially for someone who worked out her arms as much as I did.

    Paula--I would insist that my Dr. remove that fluid. I have been able to eat for the first time in 13 days. I'm still not eating a whole lot,but I'm eating and keeping it down. Since they removed so much fluid from me,they told me to expect pain for a couple of days and boy are they right. I feel like I have done about 200 sit-ups or more...very very sore!!! Other than that I'm happy and much more able to control the pain. I will keep you in prayer~~~Joanne

    Joanne
    I'm really glad you were able to get relief with the drainage. My onc sez it's probably not even technically possible, in my case because so much of the distension is air. Well, I'm about ready to pop!
    I did get some bowel movement by drinking Mag-Citrate, and as salty as it was, now I'm laid up with edema in my feet, but have had 2 days on the toilet. A result of this is a whole new set of pains,, in my chest, abdomen, legs, groin. Wierd.
    Maybe it's pockets of gas, who knows. I can eat a bit now but have been told to keep taking that awful stuff and so will try to stay with the program..look forward to another therapy..Taxatere weekly, starting next week and hopefully some pain relief.

    All the best to you and thanks for the encouragement on the draining. I'm delighted you got relief from it.
    Take Care,
    Paula2

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